Feeling tired and being fatigued are totally different things, and it took me experiencing and learning what fatigue is to understand this.
I remember when I first started experiencing fatigue. It was soon after I came home from UF (Fall 2017) while I was doing day rehab at CHOA. I had just started an oral chemo drug to try to decrease my white blood cell count, which ended up just giving me really bad side effects (fatigue, pain, headaches), with little success at stabilizing my immune system.
I had no idea why I was SO tired ALL the time, to the point where I felt like I couldn’t keep my eyes open, couldn’t sit up straight, couldn’t walk from here to there, couldn’t do anything.
At that point, I was able to nap and was sleeping ok, so I thought I was just super worn out from all the therapy. That could’ve made sense… but then it never ended…
From October 2017 until I had my strokes in January 2018, I pretty much spent every moment I wasn’t in PT in bed.
I just felt SO exhausted all the time and was unable to do anything.
But now I know why. Now that I’ve dealt with this fatigue for so long, I know what it is, and it’s not just because I’m tired.
When I’m fatigued, the simplest tasks feel impossible. If I have to throw something away, the trash can feels like it’s miles away, if I have to brush my teeth, the toothbrush feels like it weighs a hundred pounds. Now that I have trouble with word finding, I’ll search and search for a word until I finally just give up talking, and sometimes just avoid talking all together because it’s so much work.
This is something that I now deal with on a daily basis, but some days are worse than others, and some days it’s bearable enough that I barely notice it.
My nature is to try to push past it or do something like workout or drink caffeine to make it not as noticeable, but that doesn’t always help.
I kind of have to gauge how bad the fatigue is to plan how I’m going to handle it. A lot of the time, I suck it up and deal with it, because I have too much I need and want to do.
But that’s not always the smart choice. On days where the simplest tasks seem impossible, that’s when I have to just call it quits and wait it out: lay in bed, watch TV, and try to accept the fact that nothing’s going to get accomplished.
But that is much harder said than done.
My mind races a mile a minute, with all the things I have to do, want to do, and the ways I want to try to solve the fatigue.
But the hard truth is: I don’t think there’s anything I can do to speed up this process, other than giving into it and laying low.
Sometimes this means working on my to do list from my bed, but more often than not, it means doing nothing, because not only do I have to let my body rest, I have to let my mind rest. My brain gets just as fatigued as my body, so I have to try to completely shut my mind down while I let it recover.
It’s so important to try to give myself grace in these times, because as much as I want to get stuff done, I know it’s best not to.
I still tear myself down and tell myself that I’m just being lazy, but I’m learning that that’s not always the case, and I have to have grace with myself.
I think it’s important to push past the fatigue at times, so that I can still experience life, but it’s also important to give into it at times, because I know that if I don’t, it will only get worse.
It’s a really tricky game I play with this beast that I try to conquer on a daily basis, but I’ll play it if it means I’m still able to go on adventures, stay up late, travel to new places, go to concerts, hang out with my friends, succeed in school, and do all the things that make it worth it.
I hate this game, but if I have to play it, I will, so that I can get back to living the life I want to live.